Teenager suffering from rare congenital disease gets Spanish help

A Spanish hospital has come to the rescue of a 16-year-old girl suffering from a rarest-of-rare congenital skin disorder. 

Shalini Yadav, from Madhya Pradesh’s Chhatarpur district, Lamellar ichthyosis is a rare genetic skin disorder, in which skin cells are produced at a normal rate but don’t separate normally at the surface of the outermost layer of skin (stratum corneum) and are not shed as quickly as they should be. 

The result of this retention is the formation of scales, giving the patient a shellacked appearance.

It means that Shalini has to take bath every hour and apply moisturizer multiple times in a day to stop her skin from becoming hard and shedding. 

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The girl has been suffering for a long time as she can’t walk without a stick or straighten her hands since her family is unable to afford treatment. But fortunately, fundraisers in the area heard her story and called on the hospital to help following which one from Spain has agreed to treat Shalini.

Hospital Universitario Virgen de la Victoria in Malaga has decided to treat with her. 

Shalini along with her farmer father Rajbahadur Yadav and Chennai-based journalist Sanjay Pandey flew from Mumbai to Spain Saturday to be at the hospital, where she would be administered treatment for a period ranging from a week to a month.

The congenital deformity of the skin is such that it has forced the teenager to stay indoors. Owing to the disorder, Shalini is virtually dependent on parents and younger brother for even her daily routine.

The disorder has seen her even drop out of school a few years back.

Lamellar ichthyosis is a rare genetic skin disorder, in which skin cells are produced at a normal rate but don’t separate normally at the surface of the outermost layer of skin (stratum corneum) and are not shed as quickly as they should be. The result of this retention is the formation of scales, giving the patient a shellacked appearance.

The disorder existing right from birth, though not curable totally, is treated at specialized centers with skin barrier repair formulae containing ceramides or cholesterol, moisturizers with petrolatum or lanolin and mild keratolytics.